Rough Crash - HR Monitor be damned

[Ruthie24]

I've tried so many versions of journals over the past years of being sick but forget to write in them so often that they've not been as helpful as I could wish. Or, when I do remember, I haven't been able to go back and sort thru the myriad details and make sense of them. I've been using the FibroMapp App recently which is a great app but even that hasn't helped me correlate things as much as I could wish. Clearly my own lack more than the app's I suspect.

@NK17- as another Dr. Kogelnik patient, I was in a similar situation. I kept waiting for him to get the test set up in his office but finally decided that wasn't likely to happen any time soon. Personally I really wanted the test because 1) I needed to see on paper that what I had been experiencing in my body for the past several years was really happening. It is so foreign to everything I have ever learned about physical conditioning and rehab that I knew I wasn't going to be able to even attempt to convince myself to use pacing and stop trying to exercise my way out of my illness unless I had concrete evidence in hand. 2) Since I was diagnosed with POTS before ME/CFS, I needed that proof to show my POTS docs who were pushing me so hard to do an hour of aerobic exercise everyday. 3) I wanted the confirmation on paper to help prove the ME/CFS diagnosis was accurate and 4) I wanted the proof to help with my disability claim when it came up for review.

For all those reasons, I was really glad that I did the 2 day CPET test with Staci. On the negative side, it was expensive (although my private insurance paid part of it which helped) and it did set off a major crash. Whereas I walked thru the airport to go out for the test, I required a w/c to get home and was pretty much in bed for a couple weeks afterwards.

Between the fitbit and the HR monitor, I have learned a lot about what I can and shouldn't do. But like SDSue, I'm really good at muffling that voice which is telling me I probably should stop now. Prior to the fitbit and HR monitor there was absolutely NO voice there at all telling me to stop, so that is some progress at least.

 

[SDSue]

@SOC - My family noticed long ago, too. I was always very sick the first 2+ days of any vacation. Now, I realized that the days leading up to the vacation were crazy as I got the family ready to go - very little sleep and lots of extra work.Top that off with travel and I was done.

@NK17 I'll let the others chime in. You can say a lot of things about me, but "wise" about ME isn't likely one of them.

@Ruthie24 Can you please describe the FitBit and how you use it? Thanks

Has anyone tried the website called ChartMyself.com ? It sure looks useful, but I'd prefer an app that I could download rather than having it online.

 

[xchocoholic]

Hi,

Did any of you ever reach your AT just from going from a supine to an upright position ?

If so, how did you recover from doing that ?

My hr only gets up to about 110 before I have a petite mal and am sob. If I had to guess I'd say my lungs stop working so laying down isn't an option.

Moving my legs as in walking helps when upright but that's it.

Tx .. x (just laying here waiting to recover so I can make breakfast)

 

[SDSue]

Hi,

Did any of you ever reach your AT just from going from a supine to an upright position ?

I do reach AT just sitting upright - if my feet are not elevated. Thus, I spend all day with my feet up to prevent that from happening. If I reach my AT while showering, for example, I can't get it down without elevating my feet. It's why I have to sit on the floor of the shower rather than in a shower chair.

Sitting (feet down) or standing still are hardest on my HR. Walking slowly for very short distances is better, but the minute I stop moving my HR soars. I've learned to unload the dishwasher in a "fly by" manner - when I need to be up for anything, I pass thru the kitchen and put away a couple of items.

I am hopeful that proper POTS treatment will alleviate some of this. But then, I'm also hopeful that the medical community will apologize for their treatment of PWME. If I'm not mistaken, signs that an apology is forthcoming include flying pigs and a frozen hell.

 

[xchocoholic]

Hi @SDSue.

I like your "fly by" moves for emptying the dishwasher. Lol.

I live alone and can't help but be upright for cooking, rinsing and loading the dishes, etc. I tried using a stool in the kitchen recently but my knees were always in the way.

Oddly, I'm ok standing in the shower. I must be moving too much for my blood to pool. I crash after I get out and dry off tho.

This has been worse since getting a uti and I'm getting annoyed that it hasn't improved yet. I can't wait for medical profession to catch on. Been there done that.

Tc .. x

 

[SOC]

Hi,

Did any of you ever reach your AT just from going from a supine to an upright position ?

No generally, although maybe when I was at my very worst and wasn't HR monitoring. At that point in my illness, I couldn't do much of anything -- like get out of bed -- without crashing.

Later, when I was a little better and doing HR monitoring, I could reach my AT going from sitting (feet up) to standing and certainly by walking less than 5 feet. What improved that most for me was getting treatment for low blood volume. Florinef and management is what worked for me, but different treatments work for different people.

 

[Little Bluestem]

I don’t like the (220 - your age) x .6 formula because it includes your age. For healthy people, the AT may go down with age, but for pwME degree of illness is much more important than age.

If you can’t get a test, there is a Rating of Perceived Exertion that can be used to estimate it. PwME should not exceed a RPE of 13 to 15.

 

[Ruthie24]

@SDSue - I have the fitbit flex which is a wrist pedometer. It also purports to monitor sleep (at least those times when I remember to put it into sleep mode).

My ME doc had suggested getting it to use as a way to track activity and try to correlate it with symptom changes and med changes etc. What I also found was that using it along with my HR monitor gave me better insights into what I was doing (or overdoing) than just the HR monitor alone. For example, I eventually saw that every time I had more than 2 days with greater than 4000 *steps* it was almost always followed by several days with less than 600-800.

It allows you to set a "goal" for the day and then triggers a silent 'alarm' when that goal is met. I've been using that more as a limit indicator so that when I have the alarm go off, it means I really should be done for the day. See above reference to stuffing rags in the mouth of that voice in your head however and you'll know how well that's worked.
As I'm typing this I just had an ah-ha moment, or rather more like a "DUH" moment, and was thinking, I probably should have been setting my goal limit alarm for about 1000 steps less than I have been so that when I went over that limit I'd still be within reason and not over doing so badly like I usually do. Ugh! An indication of the way my brain no longer works like it use to for problem solving.

Because the Fitbit flex is a wrist unit, it gives you credit for things that use your arms like folding laundry or cooking. I also have a waist pedometer that we have to wear for my husband's insurance benefits thru work. It's interesting to compare the two. While the waist one doesn't give me much credit for a lot of what I do around the house, the Fitbit doesn't give me much credit on those rare occasions when I go to a store and push a cart around because my arm isn't moving. For me the Fitbit has been more helpful since I'm mostly housebound. It gives you *step* credit for things like washing and drying your hair though which is energy intensive but not really "steps".

It also allows you to set up to 8 silent alarms on it for each day which has been helpful for me with all the meds I'm on as I'm constantly struggling to remember to take them.

Sorry if this was wayyyyyy more info than you wanted.

 

[Ruthie24]

I don’t like the (220 - your age) x .6 formula because it includes your age. For healthy people, the AT may go down with age, but for pwME degree of illness is much more important than age.

If you can’t get a test, there is a Rating of Perceived Exertion that can be used to estimate it. PwME should not exceed a RPE of 13 to 15.

I agree that this is a great tool.....as long as someone is accurate in their perceptions. When I did my test, Staci informed me that not only was I trying to do too much but that I was way underestimating how hard my body was working during the test.

 

[SDSue]

@Ruthie24 Actually, it was perfect! Thanks so much - I now have a great idea of how the thing works.

I used a pedometer about a year ago, and noticed the same thing. If I had a 2,000 day, it was followed by several 600 days. 600 sounds like a lot if you've never tracked, but it's nothing! I think under 2500 is considered sedentary if I'm not mistaken.

Thanks.

 

[Ruthie24]

Considering that in my job (when I was still able to be employed) I used to get between 10,000-14,000 a day on many days, even 3000 sounds like nothing to me but that's about what I set my limit at now and it seems like where I can usually sustain activity as long as I don't have a lot of other stressors (like allergy season or illness) and my POTS doesn't act up too much and ....... You know the drill.

 

[SDSue]

Same here. We PWME have more willpower than should be allowed by law! If only this disease followed "normal" rules and we could work our way out of it.

 

[NK17]

Thanks @Ruthie24 for your very helpful explanation.
I think I'll get a Fitbit and get tested by Staci.
Can you tell me where you got tested (CPET), if in Ripon or somewhere else and if Dr. K signed the referral form?

 

[Ruthie24]

@NK17- I was tested in Ripon. I finally had my POTS neuro sign the referral form for the CPET test. Dr. K kept saying he would but I never could get it from the office and since I'm not local it wasn't like I could just drop by and get a signature. Staci and Jason were very good about sending copies of my report to anyone I wanted them to like my POTS doc, Dr. K, and my disability claims people.

 

[Ruthie24]

Not to change the subject too much but on an variation of this HR monitor thing, do any of you have days where your monitor seems to flip out? I have a Polar FT4 with chest strap and have had batteries replaced in both parts fairly recently and just bought a new chest strap so don't think it's mechanical. Most days it works great and then for some reason I have days where it's all over the place.

When I check a manual pulse it doesn't always correlate with my reading on the monitor but I know that sometimes on monitors they will read double in some situations so I don't know if that's what's happening or if it's just the monitor being weird. Yesterday when this was happening I was getting a lot of weird symptoms along with some chest discomfort but since I'm still alive today I'm figuring it's not really serious.

Anyone else?

 

[Sushi]

No electrical interference? That is what has sent mine loco. Or, someone else with an HR monitor nearby?

I learned quickly that 0 didn't mean I had died but that the contacts were not good. And 275 meant electrical interference.

Sushi

 

[Ruthie24]

No, it's more like brady into the low 40's or maybe HR into the 190s or 215-220 range and while my manual pulse is fast at that time it's not THAT fast. But I know at the hospital, people in afib would have their pulse show up on a monitor sometimes at twice their manual rate.

Or like right now, it's running along fine at 54-58 sitting here and then all of the sudden it's jumping way up but then I'm getting upper GI symptoms etc simultaneously so maybe that's interfering? The computer doesn't usually interfere with it so that's why it's puzzling me that it would suddenly have started doing so.

 

[NK17]

@NK17- I was tested in Ripon. I finally had my POTS neuro sign the referral form for the CPET test. Dr. K kept saying he would but I never could get it from the office and since I'm not local it wasn't like I could just drop by and get a signature. Staci and Jason were very good about sending copies of my report to anyone I wanted them to like my POTS doc, Dr. K, and my disability claims people.

Thanks @Ruthie24, I hope Staci is still running the test in Santa Ana. I'll ask my young neuro or rheumatologist at Ucla to sign the form.
I can't wait any longer and certainly can't wait for dr. K's OK. Last year it felt a bit awkward to do it "behind his back", I was still under the impression that at some point he would offer it at his clinic, but it never happened ...

 

[SDSue]

@Ruthie24 I have a Polar, too. The only thing mine does is loose signal, sometimes frequently. I have to hold the "watch" part up to the chest monitor to get it to reconnect.

 

[Sushi]

No, it's more like brady into the low 40's or maybe HR into the 190s or 215-220 range and while my manual pulse is fast at that time it's not THAT fast. But I know at the hospital, people in afib would have their pulse show up on a monitor sometimes at twice their manual rate...

I can comment on the Afib part as whenever I get it I watch it on my HR monitor. It jumps 40 or more points from second to second--it doesn't just register high. I can also feel that it is jumping while pressing my wrist.

I believe that HR monitors average every two beats or so and that could make for some weird readings. Like if you skip a beat or get a few seconds of tachy--you might get a 30 when you skip a beat and weird readings if it is averaging the tachy.

Sushi